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Cancer spread to Brain Lining and Spinal Fluid?

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Hello, I am usually on LC site, mom has SCLC w/mets to brain and spine. Brain and spine tumors have been treated with radiation very successfully. She has become weak and unable to stand, walk, roll over etc.....they have scanned entire body, all clean.

They are wanting to do MRI of brain lining as well as a spinal tap to check those locations. Does anyone have any experiences to share on this subject?

Many thanks
Elysia

momzzie24
Posts: 1
Joined: Jun 2010

not sure how I can help. I was just diagoned with spinal fulid cancer which has also gone into my bones... I was a survivor of breast cancer for 2 years. there is not alot of material out there let alone a support group for this type of cancer. all I know that they told me that I had about 2 to 6 months to live and the disease of the spine will eventually effect my walking talking and memory seeing that the cancer coats the nerve endings in the spine and effect neurological things. I can only share more of what I have learned of the treatments and what I have excerienced thus far. I know this is hard for you and pray you find time to share with your mom... if you or your mom need to chat more let me know. thanks momzzie24

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

I am sorry to hear of your diagnosis. Are you getting treatment? Do not listen to the numbers, a friend of my moms had breast cancer that spread to bones 12 years ago, she is still her getting regular maintenance treatments and leading a fairly normal life.

They are finally doing brain MRI today (had a few other issues to deal with first) Oncologist said he would leave it up to the neurologist to decide whether to test spinal fluid...I'm thinking DO IT!! All other body scans are good so tackle all of the central nervous system instead of waiting for the next shoe to drop.

Mom's was detected in her thoratic spine 3/31, she had radiation for that and the tumor is gone, I guess if it is in the fluid it is a whole different game.

My best to you, thanks for your post...

Flyerzzrul
Posts: 1
Joined: Sep 2010

I am sorry to hear your news. My wife was diagnosed with breast cancer in 97 at 31 years old. It came back in the spine, neck and other bones in 04. 2 days ago we find out she has a tumor between her brain and skull and they say the cancer is in her spinal fluid, the worst possible scenerio as the oncologist said. We were told she has 3-6 months left. I am looking for similar scenerios with better outcomes.

awchan
Posts: 1
Joined: Mar 2011

Hello, my mom was just diagnosed with cancer in her spinal fluid and they plan on performing a third spinal tap to inject the chemotherapy into. I was just wondering whether you have gone through it and if it's painful? She has a tumor in her brain as well and they were thinking the chemo would be able to kill it as well.. I'm just very frustrated with the medical system for not detecting it earlier..

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

Hello I usually post on the breast cancer page but was reading around in here since mine has now developed into the liquid in my brain and spine. I had a ommaya resovor (sp??) put in and have received 2 treatments in it so far. No one has given me an expiration date! and I dont want one. The spinal tap or lumbar puncture is very painful BUT they also pull fluid out of the ommaya port in my head which is not painful at all neither are the treatments. I had a seizure on May 29th and am still recovering from that so I am a little weak still and am walking with a walker and Im only 43 :( hope to be strong enough to get off the walker SOON!!! Have hope and help her fight!!!

Ctahan
Posts: 1
Joined: Mar 2011

Hi, this is the first time I am writing on this but your story really struck me. I am in the hospital right now with my Mom who has had breast cancer for several years. We were just informed that she has Leptomeningeal Disease (cancer cells in the membranes around the brain and spinal cord) The doctors now want to insert an Ommaya Shunt and I was just researching to find out the dangers or risk of it. I am glad to read that in your experience the port is not painful and neither are the treatments. Thanks for the information! Stay strong!

savemydaddy
Posts: 1
Joined: Jul 2010

my daddy was told yesterday he has spinal fluid cancer. please tell me there has been some sort of treatment option. please tell me they have found a solution. where do you live, is there a cancer center or are you going to the hospital. please tell me. i need my daddy, please.

pinkflutterby's picture
pinkflutterby
Posts: 615
Joined: Jun 2009

I have some type of ressovior in my head and I get treatment at my cancer center once a month in my head. It is totally painless and pretty uneventful. I have had 2 seizures after the treatment mild one took me to the hospital one did not. Best wishes for your Daddy and Ill add him to my prayer list!!!!!

Vulgarism's picture
Vulgarism
Posts: 47
Joined: Dec 2009

Regarding the spinal fluid as well, my tumors originated in the brain. However, as the brain is connected through the spine, there is the possibility from what I gathered for cells to travel, be it from the spine to brain, or vice-versa. It was found at one point minute hints of the cells had been found in my spinal fluid before, so they now test both on occasion.

It may be something worth ruling out, at least, in my opinion.

jeani13's picture
jeani13
Posts: 9
Joined: Mar 2011

Hi

My husband was diagnosed with a Metastasis tumor in the brain in April 2009. The primary site was small tumor on the right lung. He went through brain surgery to remove the tumor. After he received 25 whole brain radiation treatments, 30 on his chest and 7 rounds of chem. He was in remission for approximately 1 year. In October 2010 he started to complain about back pain, but we thought it was old injuries acting up. Finally on Christmas Eve 2010 after 2 weeks of excruciating pain he allowed me to take him to the emergency room. He was diagnosed with a mass on his spine, in that 2 week period he loss his ability to walk without assistance, he needed a walker, he has had many falls and he had another 16 rounds of radiation. He appeared to be responding, but he quickly loss all ability to walk or stand without major assistance. Needs a Wheel chair, walker or major assistance from family. Last Wednesday he went into surgery to get a procedure called Vertebroplasty and have a medaport for pain inserted in his chest. We will talk to the Oncologist on Monday to see what the plan is. Right now he sleeps all the time, loss of appetite but still eats, pain (controlled now) in legs, ankles and back. Suffering from incontinence, slight confusion, exhaustion.

Jeani (his wife)

jeani13's picture
jeani13
Posts: 9
Joined: Mar 2011

We talked to his Oncologist today to see what the plan is, hospice was what we decided would be the next best step, he has cancer cells in his spinal fluid. I am sad and will miss the man I was married to for 32 years. Looking for prayers and comfort during the next few weeks, months.....Whatever God has planned for him I will be here to assist.

Jeani

Beckymarie
Posts: 358
Joined: Aug 2009

My husband of 32 years passed away June 2010. We too had hospice. They were wonderful. I wish I knew something to say to make this any easier. I am sorry for what you are all going through. You and your family are in my thoughts.

jeani13's picture
jeani13
Posts: 9
Joined: Mar 2011

Becky

Did he also have cancer cells that spread throughout his spinal fluid. Wondering if you want to share more of what happened if he did. Thanks for the thoughts...

Beckymarie
Posts: 358
Joined: Aug 2009

No he did not have cells in his spinal fluid to my knowledge. He was given a spinal tap shortly after he was diagnosed with a Stage IV GBM but it was clear. His tumor strictly in the brain but did eventually spread throughout the brain.

Kell88
Posts: 1
Joined: Oct 2011

I feel extremely sad to read of all these cases. My mum fought breast cancer in 2008 and had a masectomy and underwent Chemo then in may this year she had extreme headaches and learned she had a brain tumor and had it removed and had radiotherapy, then around 2 months ago she had more pain so she had a few scans done and realized she had cancer in the lining of her brain, they said there's not much more they can do and worst case she has 2 months left. It has now been nearly 2 months and she is getting worse everyday. She's 52 years old and before this was so healthy and full of life. My now husband and I had planned to get married in oct 2012 but after we found out mum was terminal we brought the wedding forward and planned it in 3 weeks. We got married 2 weeks ago and mum was feeling pretty good and enjoyed every bit of the day, especially walking me down the isle with my dad. The day couldn't have been more perfect. Since then she has gotten worse and it is heart breaking. How is it possible to not have s cure for her illness? I'm angry, upset, frustrated, and extremely sad. Nobody wants to watch their beautiful mum get worse by the day and its not fair at all.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

but I am thrilled to hear that she rallied for your special day and was able to enjoy it with you and the family.

As for the lining of the brain? Unless I am mistaken, that would be the meninges in which case the tumors could be meningiomas. I am very familiar with meningiomas as I have many snaking their way through my skull as well.

What I can tell you about them is that they work by compression rather than invasion (at least that's what they say in theory). Mine have "compressed" their way into my eustacian tubes, around my carotid artery, left optic nerve, optic nerve chiasm and are also at the skull base.

Your mother's tumors could be considered inoperable due to the location (carotid artery), how many she has ( I know a lady who has been scheduled for 18 separate brain surgeries due to her massive meningiomas), grade, size, etc.

As for the tumors on the spine, they may not feel that they can safely operate or have any further treatment options where the benefits outweigh the risks.

Another reason they may feel she is terminal is that her age, overall health condition, previous medical interventions (chemo, rads, surgery, etc.) could make her a bad candidate for any further treatment.

Please use the time left with your mom to let her know how important she is to you, what you have learned from her and what you hope everyone can learn from this experience. This is not an easy journey, unfortunately, it is one many of us have to face.

You're in my prayers.
Teresa

Tynell
Posts: 1
Joined: Aug 2010

my father was told just today that all the pain muscle loss and seizures is because he has cancer in the linning of his brain. a year ago he was told he has cancer in his bones, liver, soft tissue, and lungs then 2 months ago he was told he was done with his kemo treatments and he started the maintance treatments then last saturday he was in the hospital and they has done MRI, scans on the brain and now 2 spinal taps.

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